Thursday, September 24, 2009


**Warning** This post has a bit of a rant tone to it, which is a symbol of my personal frustration. I apologize if the tone disturbs any of my fellow "positive-thinking Fibro Mates".

Those of us who have had Fibro for a while know the "old" frustrations well.

In the beginning when we're diagnosed we go through some self pity, followed by excuses, rounded out by days in bed where we excuse our self pity by quoting whatever info we've found online to validate our decision to "give up". "My online group has lots of women on it who say they can't get out of bed, so I'm not alone."

No, you're not alone. There are a bunch of Fibro Mates who can't get out of bed everyday...or maybe...they just won't. FACT: Most bedridden Fibro Mates have ADDITIONAL conditions that hinder their daily abilities. Another FACT: Most of the Fibro Mates I know personally have additional conditions that DO NOT hinder their daily abilities.

So where does that leave us? I think it depends on the severity. I would never tell someone with Fibro and terminal cancer to get out of bed and exercise just like I would never tell someone with "just" Fibro to stay in bed and rest until they felt better.

I've said it often in the past...we have to be HONEST with ourselves. Brutally so. Are we doing all we can to do the best for ourselves or are we letting excuses bring us down. Only the sufferer can answer that question.

I think it is clear where I stand on the issue of excuses since I feel I was once the biggest lump of excuse laying trash talkin' defeatist on the planet.

That being said I should clarify as always that pain and being bedridden isn't to be made fun of or taken lightly. I still have a good 4-5 days a month where I feel completely sapped and unable to do much of anything. Even more days out of a month I feel no ambition and I STILL make up excuses. "I'm too tired to clean house today."

BUT...those days have become the exception and the norm is me pushing through my exhaustion (no easy feat as we all know), pushing through pain (again...suck-age!) and forcing myself to write every day to get my newest book done.

It takes drive, it takes determination, and a more than a little bit of self-honesty.

So when I get a letter that basically tells me that I've ruined someones life because they exercised and pushed themselves for 10 days and felt no better (in fact felt WORSE) and they wish they never would have listened to me...I get frustrated.

Actually, I get mad. And then I get frustrated.

Having Fibromyalgia is tough. Doing a lot of research on the subject is even tougher because everyone claims different things. (This doctor says anti-depressants are key...this one diet...the next one anti-seizure medication) But there is ONE thing that everyone can agree on. Exercise helps.

Of course, exercise SUCKS for Fibro patients. We don't enjoy it. And it takes a while to see the benefits.

Why? I have a theory. Our bodies are so depleted of the "happy" brain juice that we have to fill that deficit before feeling anything positive. And of course, exercise rarely feels good for us, so it is really hard to keep going without eventually deciding (erroneously) that it is doing nothing and quitting.

Ten not nearly enough. Talk to me after ten months. That's about how long it took me before I started noticing benefits. I used to have migraines 5-6 days out of a week. Now I have migraines 4-5 times a month. With physical therapy 2 times a week I was able to improve. Now I walk daily if I can manage it.

And don't be afraid to take a day off if your pain is simply too much. Just make sure it is the pain that is stopping you and not your own excuses.

On top of this letter I responded to TWO posts on two separate loops that complained of similar issues with exercising and "doing stuff" and with both I was firm. Perhaps more firm than I would have been prior to this letter. (I would love to share the letter but I always give my readers anonymity if they request it and this letter did.) All of us HAVE to make an EFFORT to get better. We don't have a choice. Well.. a good choice. The choices are to push ourselves and live our lives or to fold and let Fibro dictate what we do.

The words sound easy. "Oh just start exercising." But it isn't! Exercising with Fibro isn't for the weak. It HURTS. Gods, it hurts. There isn't a day that I exercise that I don't hurt. But there are days where I exercise where it hurts less. Of course, it took me a year to get here but I'm glad as HELL I pushed myself. I'm glad as HELL that my husband told me I wasn't worth respecting because that is what it took to get me off my butt ... I cried a lot. I still do, through the pain. Nightly actually. When I've gone my whole day through pain and managed to make it to the bed without collapsing before hand...I'm proud! And every day is like that for me. Every day is a struggle still but I am living!

So, Anon, ten days is simply ridiculous. I know, however, how right now, the pain of working out is making you irritable. Without seeing benefits it is soooooo easy to say "screw this!" and just quit. But if you're reading this I implore you to keep going.

Push through the pain, the crankiness, the feeling of "what is it all for" that we all get and tough it out! (LOL. I get in trouble for telling people that all the time but here it goes again.)

If the exercise you're trying hurts too much (and it happens to me all the time), try something else to switch it up. Share the pain with other body parts so to speak. If you walk each day like I do (and for some reason lately it makes my chest muscles hurt) then walk once a week and then yoga another day or tai chi or dance or get the Carmen Electra Lap Dance video... (Yeah I've tried it! So what?!?)

Bottom line is this. There are no quick fixes for lack of energy for Fibro. There are no miracle pills that will take away all your pain. But...exercising puts you on a good path. But the very long.

You may feel as if I'm pulling something out of my backside and throwing it on the screen for all to read without any validation but you're wrong.

I've been through it myself and I feel the difference. I know many other Fibro Mates who I talk to regularly that like me...struggle to exercise but in the end, feel the benefits.

If you believe you will'll fail. But I believe in you. Please, "keep moving forward".

May you find something positive that speeds you towards Fibro remission. Okay, rant off. Phew, I feel better.

All my best,

***Still to come:

-Men and Fibro (waiting on a few emails for this one)

-LDN (Low Dose Naltrexone.)

Sunday, September 6, 2009

Carnival Rides And Fighting The Unknown!

A few days ago I had a pretty serious flare-up. UGH!

One thing that bothers me about flare-ups is how quickly they come at you. For several days you feel great, you start to make plans and then WHAM! (not the 80s band) you get kicked down by pain and sleepiness without the sleep. (Even my hair has been freaking out! The ends looked like I stuck my finger in a live socket.)

However! During the flare-up, there were a lot of things I had to do. Labor Day weekend and my daughter's youth called to me. " must move your posterior up from the bed and walk many miles." To which my Fibro self laughed.

We were supposed to go to the Renaissance Festival here in Michigan as well as the Peach Festival. Of course, I also heard from my literary agent who asked for more chapters on my Young Adult Tuesday.

Needless to say, I was panicking about the Flare-up and allowing myself to get worked up over the "need-to-do" pile building up around my weekend.

It wasn't easy, My Friends, but pain and all I rolled myself out of bed, took a shower (much to the appreciation of the general public I'm sure), and pushed through the pain.

By the time I reached my car after the Ren Fest, I was in so much pain I couldn't sit still, and I live a good hour and a half from the Festival. When I pulled over to fill up on gas, I had to relinquish the driver's seat and just curl up in a ball.

I napped when I got home and felt better but woke up sore even this morning. Too bad I didn't have time for pain. I had a Peach Festival to attend with my daughter and my dad, half sister, "real" sister, and my dad's new wife.

My neck hurt like hell, my calves ached, but the biggest problem was when my half sister laid the guilt trip on me about not having anyone to ride rides with.

"My Fibro," I whispered to my dad. "I have no idea what it will do to me on these rides."

My dad smiled and then nodded as if he could totally understand even though I suspected he didn't. But eventually, when everyone else around me refused to go on a damned ride with her...I caved.

Of course the craziest ride at the carnival was the one she wanted and so, guilting my real sister into going with me and the step sister by admitting I was afraid I'd get sick or dizzy and pass-out... I rode a carnival ride.

By the time it was my turn to board the crazy ride, I had worked myself up so hard I felt my heart pounding in my throat, and all because I couldn't stop thinking of what *might* happen.

Before the shoulder harness locked in place I kept thinking, you don't have to go on this thing. You can get off with just a small pride smear and at least know that you'll feel fine by the end of the night. Why take the risk of feeling like crap?

But I kept thinking about all the things I've given up in the name of Fibro. All of the things I'm told I shouldn't do or might not be able to do anymore. The constant nagging fear in my head over every little trip I make.

When I go to Las Vegas and my Beau wants to take me up in the mountains, I worry about having an IBS attack that would drown me in embarrassment. When I get on a plane I worry about having a panic episode. When I want to go for a walk every day I worry that once I'm far from my knee will give out or my back will cramp up or my legs will get that *damned* "lack-of-use" itch that really makes no sense considering I walk ALL THE TIME.

I thought about all of this as I stood in line for "Freak Out" the carnival ride. (Fitting name isn't it?) I always try to be as prepared as possible for all of my fears. For the mountain hikes I bring pain pills, wet t.p. wipes and a plastic bag. For the planes I bring a folding hand fan which reminds me just to feel the air and breathe, for the walks I always have a cell phone and I only go if Dan is home just in case I need him to drive around the subdivision to pick me up.

In other words, I try to plan for everything. Well not tonight! I made myself get on that stupid ride and as I sat there thinking I was about to have a panic attack...I made myself dance to the music in the background. When in doubt...wiggle your butt and pretend you're having a great time! The panic ebbed and though the ride was a bit much for me, I was so glad I rode it that I rode seven other rides. I spun, I dipped, I twirled, I scrambled and in the end I finally had to concede once I felt the nausea tap me on the shoulder but I was proud!

Such a silly accomplishment, no? And yet one so very vital to Fibro.

Planning for possible problems, like packing wet wipes and hand fans is a great idea, but we, as FibroMates have to learn that every once in a while, taking a risk on the unknown reminds us that WE ARE ALIVE and able to at least pretend to live normally.

Take small steps to feeling good about yourself again!

Coming Soon: I received a letter about men and Fibro. I also received another about future pain fears. I've done more research on LDN for those of you who have asked me why I haven't posted about it. I feel a bit more confident about posting it on the blog.

I'll try to get to these topics soon but as I stated earlier in this post, I'm a bit swamped. I'll do my best though! And hey, keep the questions coming. Even the ones you think aren't important enough to ask!

All my best, My Friends!
Here's hoping you all are working for those 98% painfree days,